I'm not a fan of making New Year resolutions. Life lessons occur throughout the year, so 'resolutions' to change for the better should occur throughout the year. I will instead reflect on his progress in 2009, and my hopes for 2010.
Reflections on 2009
My husband commented today that our son has progressed so much. That comment caught me off guard because I had not yet reflected on how much he has changed over the year. For me I try to take one small step at a time, in my journey to help him. It overwhelms me if I project too far in the future (even a year ahead is too far ahead!).
Feeding and oral motor
He's now able to eat the same home cooked food we eat and that's a huge improvement. If we eat out, we still have to very mindful of where we go as he still has feeding issues. The quantity he eats is still very small compared to his peers. He still relies on Pediasure to supplement his nutritional needs but we've been able to cut down the quantity consumed as he's made progress in eating solids.
He still gags and that's not just during feeding. He gags when colouring. He gags when he talks a bit too much. He used to gag when he ran a bit too much or exerted himself a bit too much. His threshold of "a bit too much" has improved though.
He still drools but that's reduced too. He used to constantly wear a bib, but is far lesser now.
The incidence of vomitting has slowly reduced too. I'm really relieved because the velocity of his vomit is akin to turning on a fireman's hose. It's not just the smell and mess, but its the discomfort that he has to experience and my heartaches each time. Now that the occurence has reduced, the worry that he's ill arises whenever he vomits two feeds in a row. Just this afternoon, he vomitted his entire lunch but thankfully, there was no further vomitting.
He's a bit less sensitive in the oral motor/facial region. It used to be that we could not wipe his mouth as he'd vomit (yes, he was a messy looking boy!). Now, we can, but just not immediately after eating. He still occasionally screams when I brush his teeth but at least now, he seldom gags when I brush them.
The strength of his blowing has improved compared to the start of the year. In the last month or so, I did less blowing activities (and more of other activites) which I think unfortunately resulted in reduced blowing strength. It's like a juggling act and I honestly find it hard to get the right balance for his various activities.
Speech
The development of his speech has been very good. It seems to progress in spurts and the last few weeks saw another speech developmental spurt. In the last few weeks, he's talking a lot more, asking lots of questions (mostly to which he already knows the answer), and surprising us on a daily basis with the things he's saying. That might be due to his exposure to the holiday programme or starting him on Effalex, a DHA supplement (both of which were around the same time).
With the good progress noted, the frequency of his speech therapy sessions has reduced. His previous session was in October, and the next one would be in a few week's time.
Clarity of speech is still a big issue, as is his lack of confidence in talking to others outside the household.
Music class
He started music class earlier in the year. I've written about his music classes, so you already know what's happening on that front. Overall, I think of late, he's getting the sense of rhythm, and loves playing with the boys in his class.
Neurosuit
He started Neurosuit therapy around the middle of the year. It's a lot of hard work on both his part and our part (he hates it and him hating it makes it much harder), but we saw improvements quite quickly. Overall, his walking is now near normal in appearance, the volume of his speech has increased, his drool is lesser, his upper body is stronger, his balance is better, and his stamina has improved.
Cranial sacral therapy
CST sessions were increased to twice weekly, which I believe contributed to improvements in his oral motor, gross motor, sensory issues, and improved sleeping habit.
Gross motor
He's so much more flexible in his gross motor movements. I love it! He can squat easily. His walking stride is longer and narrower. He can climb a ladder (if rungs are not too high). He walks and runs on his tip toes a lot less. He can throw a ball further. He's more adventurous at KizSports. He can walk up the stairs alternating his feet (but still needs to hold onto the wall or banister) - it's only happened lately and not often, but the fact is that he can do it. He can pedal (with both trainer wheels on) - again it's only happened lately and I still have to help him most of the time, but he finally can!
He still can't jump. He still cant get into the car by himself (or climb onto a platform that's more than say, 10cm high). He's still scared when there's someone walking or running behind him. His upper body strength still needs working on. His hip stability still needs to be improved. His running gait still needs work. He's not achieved "toe-heel".
Fine motor
There're improvements but no where near that seen for the areas of speech, oral motor, gross motor and cognition.
Cognitive development
I'm so thankful that his CP has not affected his intelligence. He's learnt to read decodeable consonant-vowel-consonant words. However, from around November, he lost interest in my homemade books (*sigh*) so I dont force him to move on to the 'blue series'. Although, it might be that I've not been creative or knowledgeable enough to keep the up the progress. Instead, nowadays I read aloud to him so as not to lose the interest (but I still risk him forgetting most of the sight words he's learnt).
Hopes for 2010
Obviously, I hope for greater improvements in all areas of his development. I hope to maintain or increase my motivation level because I think "therapy-fatigue" (if there's such a word) has set in in 2009.
Hyperbaric Oxygen Therapy (HBOT)
I hope to start HBOT. I've not yet decided when to start as I'd like him to settle into kindergarten first. I've also yet to figure out how to fit it into his schedule (school in the morning, gross motor exercises in the evening, min 2 hours after food). The recommendation is for 40 sessions, an hour a day at the centre, on consecutive days (if possible) with breaks for illness, and weekends.
Schooling (kindergarten)
Tomorrow will be his first day at kindergarten. He went for their holiday programme in Dec, so he's familiar with the place and I will continue to be his shadow aide.
But he's not met his class teacher yet, and the holiday programme had very little teaching content. He's a lot more playful lately (loves to get up and about) so I hope he can sit and pay attention when he's supposed to.
I hope his speech improves greatly such that the teacher and his friends are able to understand him most of the time. I hope he makes friends. I hope he is able to learn. I hope he can cope with the demands of being in kindergarten (it is a lot for him). I hope he improves so much that he doesn't need a shadow aide.
Self care skills/independence
One major aspect of self care skills/independence I hope to see great improvement is in the area of toileting. It's been slow progress in getting him to go to toilet to urinate. There's been no progress in getting him to poo in the toilet or potty.
Apart from toileting, there are lots more self care skills he needs to learn from the smallest things like carrying his bag, zipping and unzipping, opening the cover of his snack container, self-feeding and drinking, to bigger ones like standing up for himself, communicating with the teacher and classmates, obeying instructions.
Helper
My helper's employment contract expires in just a couple of months' time. She had very helpful in getting us to where we are right now. I've been so reliant on her. I'm hoping she'll extend until middle of the year so that my son and I get settled down into kindergarten and hopefully have completed one round of 40 HBOT sessions by then. I'm hoping that the new helper is quick to learn, obedient, trustworthy, loves my son, and can cook!
Health
I hope his immune system continues to strengthen. I hope for minimal sick days especially now that he's starting kindergarten.
I've to stop here as it's getting very late and tomorrow's the first day of kindergarten. I'd very much appreciate you praying along with me in my journey. Thank you! Prayer changes things!
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